You are not logged in. Please login or register.
La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 4
Does anyone have info on success and side effects of Folfiri + Avanstin?
Hello I just wanted to update everyone on Joanne's visit to Vanderbilt-Ingram Cancer Center in Nashville. After meeting with Dr. Laura Goff she reassured her that the path that Dr. Johnson has her is the right one. So right now she is on chemo. Tarceva 150mg everyday and cisplatin and gemzar every two weeks. She will have a scan in a couple of weeks to see if it is working.
Dr. Goff did discuss with her about going back to her original tumor (that they removed in her resection)and test it for PIK3CA alteration status. Also there where about 11 or 12 other things that they wanted to test it for. If it comes back positive for the PIK3CA alteration status then she would qualify for the CBYL719X2101 clinical trial that they have going on right now. They have this drug BYL719 that keeps a protein called PI3K from working. The PI3K protein belongs to the PI3K pathway. This PI3K pathway is a series of chemical reactions between proteins inside a cell. The PI3K pathway is involved in cell growth and cell death. In many cancers a gene related to the PI3K pathway, called PIK3CA has changed amplified or mutated. These chnges in genes are thought to cause the growth of tumors.
There are 4 centers in the US that are currently doing this trail. I think there are some centers in Spain, and other European countries. The 4 in the US are Vanderbilt-Ingram Cancer center in Nashville,Sarah Cannon Cancer Center in Nashville, M.D. Anderson in Houston, and a cancer center in Boston can't remember the name off the top of my head. It will be a couple of weeks before we get the test results.
Basically from what I understand is that this drug BYL719 is suppose to cut the switch off that generates the tumors.
I will update when we get the test results back. In the mean time she will continue chemo. Hopefully the chemo will work in shrinking the tumors. It worked the last time in shrinking the tumor. If this doesn't work I think Dr. Johnson is going to try Folfox.
Stay Strong Survivors and be your own Advocate!!!!
Thank you everyone for the feedback!! I will definitely check into the searches and will update later on in the week.
May piece be with you all!!!
Hello Survivors and Caregivers!!!
My name is Brittany and my story is about my best friend Joanne. In July of 2011 she went in to have a CT scan. She was diagnosed with Uterine cancer two years earlier and had a Hysterectomy. Dr. Smiley said it had been a couple of years since her last scan and said lets do one just to make sure nothing has popped up somewhere else. Well it did!!! She had a tumor the size of a grapefruit in her liver close to her Inferior Vena Cava. So she meet with Dr. Johnson (a gastro oncologist at West Clinic) he basically told her that the only cure was a transplant so her sent her to Dr. Campos (a liver transplant surgeon at Methodist University in Memphis). Dr. Campos told her that with this particular type of cancer that she would not be a candidate for a transplant. So here we go - Plan A!!!!! After reviewing her scan he said that she possibly could have a resection but was skeptical if he could do it because he was afraid that the tumor had wrapped itself around the IVC. The only way that he would know was to open her up. So in September the surgery was scheduled. Well our worst fear happened he opened her up and closed her up, called in the family and basically told the family she would be here for thanksgiving but not christmas. This man had no bedside manners what so ever!!!!!!!! Not once out of this whole situation did he say that she could start any type of chemo and possibly put this at bay till some other option came available.
Ok Plan B!!! She went back to West Clinic and met with Dr. Johnson he immediately started her on chemo consisting of Tarceva 100mg, Cisplatin, Gemzar. During that time he sent her file out to various surgeons and scheduled a scan in 6 weeks. After her scan the chemo was working and the tumor was shrinking. Dr. Alexander Parikh a surgical oncologist at Vanderbilt-Ingram Cancer Center responded to her file and wanted to meet with her.
Plan C!!!! Joanne met with Dr. Parikh and he was very confident that he would be able to do the resection. He scheduled the surgery in Feb. of 2012. The surgery was successful!!!!! The tumor had not wrapped itself around the IVC but instead penetrated it so the Dr. was able to repair the sidewall. So Joanne was on the road to recovery. After nine days in ICU she was able to go home and start her recovery. After meeting with Dr. Parikh on a follow up visit she was told that she had positive margins and needed to start Radiation mixed with Xeloda. 27 treatments!!! It liked to have killed her literally!! The radiation ulcerated her esophagus and she developed Hand Foot syndrome. With her esophagus being ulcerated she had a had time swallowing and was limited to what she could eat!!!Which was tuff because her body was still trying to recovery from surgery. Joanne went for a scan in May 2012 and the scans where clear. Then she went for a scan in August 2012 and Dr. Parikh found 3 spots on the left side of her liver. Which the doc said wasnt surprising to him considering that her Hormones where in hypermode to help her body heal. Which as we all know that is what the chemo feeds off of. He told her to go back and meet with Dr. Johnson about starting chemo again.
Plan D!!!!! When we meet with Dr. Johnson and gave him the scans from Dr. Parikh the spots didn't show up. We were baffled!!!!!!!!! So Dr. Johnson ordered an MRI and what it showed was very saddening there were spots on the left side and spots in the new growth and a spot on a lymph node between the liver and kidneys. Dr. Johnson pretty much told her to go home and get your affairs in order!! Not again!!!! That was the hardest news to hear and the talks that we had afterwards. Funerals wishe, promises that friends make for each other, going through the emotions of not being able to see her granddaughter (who will be two in dec) grow up, or to watch her children start families of their own.
So the next day I woke up with a new attitude and so did Joanne!!! She wanted to fight this with everything she has!!! So I started doing a lot of research to see what was out there and I found this website. The information that is on here has given insight has to the options that are out there. She has since started chemo again and has a scan in 6 weeks in the mean time we go to Vandy next week to meet with Dr. Parikh and Dr. Laura Geoff to see if there are other options. Also she she is possibly looking at going to M.D. Anderson in Houston.
One of the things that Dr. Johnson mentioned was chemoembolization.
Has anyone had that done and was in successful? Also is there anyone out there that has had this same situation happen and what where your options/treatment?
Posts found: 4
The pun_posts_feed official extension is installed. Copyright © 2003–2010 PunBB.